Back to Reality

It’s been 4 days since Isabelle, Lori, Mike and Jordan Kelley flew back to Iowa – and I am missing a piece of my heart.

Looking back on last week, I feel like I was visiting my own personal Disney World – Tet8p World.

Izzy’s visit was so much more than I imagined it. Yes, the TV publicity was TOTALLY AWESOME, but what I will remember the most was a sense of belonging and understanding.

When Josephine was having a meltdown one afternoon (one of many, by the way), Lori came upstairs and said, very simply, “Ah, yes, I remember those days.” And each girl’s meltdown led to the other girl’s meltdown. A cacophony of cries in various patterns and pitches and all I could do was smile and laugh. Not laughing at the sadness of the girls, but at the similarity of it all at the same time. It was like J-Bean and Izzy were talking in their own language and got each other – it would be nice to have a lesson in their language – would definitely help us out a bit more.

I know we will see each other again and the girls will be in different places developmentally. And it’s my hope they will pick up right where they left off last week – ready to throw science and medicine to the wind and do what they do best – AMAZE and AWE everyone they put under their spell.

Amazing Support for Josephine

The pouring of support for our daughter Josephine and her friend Izzy has been nothing less than amazing! We are forever grateful to so many people who help us on a daily basis.

We all gathered in front of the TV this morning to watch the great story that PIX 11 News did on Josephine and Izzy and the rare genetic disorder they both share. We believe this story not only helped to bring some awareness to their particular disorder, but also the many, many people who have special needs.

Anyone who has a special needs child can attest that it changes your life forever. It’s true that some of your hopes and dreams change…but in some ways, for the better. You find yourself focused on the present–and not to think too far in the future of what may or may not be. Instead, we find ourselves everyday celebrating ‘what is.’

I work at a motivational speakers bureau (Eagles Talent) and one of my of my favorite speakers (W Mitchell) has a saying, “it’s not what happens to you, but what you do about it.” When we learned about our daughter, we had a choice, to be negative or embrace the positive. We chose the latter and haven’t looked back. Yes, our lives are filled with challenges, but we wouldn’t trade them for the world.

This has been an extremely special week for us as we have hosted the Kelley family with their little girl Izzy. We absolutely love her and have already developed a wonderful bond with her (we even got to celebrate her 6th birthday with her yesterday!). She has been her all week going to special therapy and already we can see that it’s helping! Words can’t describe what it’s been like meeting Izzy and her family–and will miss them when they return to Iowa (sooooo glad we have social media to keep up to date!)

We filled blessed to be involved in the special needs community (and love the school that our little JBean attends PG Chambers) . We also feel extremely bless to have tons of support from our family and friends.

We look forward to sharing new information about Josephine and are going to work towards starting a foundation for kids like Josephine and Izzy with rare genetic disorders.

TETRASOMY 8p MOSAICISM is NATIONAL!!!!

My heart is exploding with pride and joy and my eyes are crying enormous tears of happiness!  After 3 years of fighting to get the word out about rare chromosome disorders, TODAY, the dream came true!

WPIX Channel 11 Morning News aired a segment by reporter, Dan Mannarino, about J-Bean and Izzy meeting for the first time.

The PIX web site has received thousands of hits and Dan got a call from AOL.com, asking to make our story the video of the day…

Now, when you Google the title of the video, the search results show the video is on the web sites of KTLA (Los Angeles), Fox 5 San Diego (San Diego), Chicago Tribune (Chicago), Fox 59 (Indianapolis).

My hands are still shaking as I am typing!

And I just found out that a parent registered with The Chromosome Disorder Outreach because of the story.  AMAZING!!!!

Of course, I need to thank Laura Gallagher for bringing it to the attention of the executive producer at WPIX News (name withheld until I get permission to add it), Dan Mannarino of WPIX Morning News, Carmine Iacullo and the Knights of Columbus, Azriel Novogroder of Novogrow and the simply wonderful Kelley family…none of this could have been completed without each and every one of you!

Without further ado…THE VIDEO!!!

http://www.wpix.com/videobeta/e501b642-e287-404f-a081-5f2d7c0f095b/News/Two-Girls-Battling-Rare-Chromosome-Disease-Meet-For-First-Time

Pictures of Two Beautiful Girls

We were able to capture a real adorable moment with Josephine and Isabelle bonding at the end of the night.  Too precious!

And I still can’t believe Isabelle is here.

I was holding Isabelle while these pictures were being taken.  She wanted to cuddle with me.  My heart was filled with pure joy and amazement the whole time I was holding her in my arms.  Part of me wanted to cry (happy tears), but the other part of me took over and said, “This is not about you.  Focus on this wonderful girl laying on your chest.”

And that’s just what I did.

What an Amazing Day – After the Meeting of Josephine and Isabelle…6-11-12 @ 12:02 AM

I feel validated.  I feel inspired.  I feel in awe.  I feel…happy.

Josephine and Isabelle had a wonderful first day together.  I will be posting the video of their first of MANY play times for the week, so keep an eye out for it.

Since Josephine’s diagnosis in July 2010, there have been many times when I have felt alone in this journey.  No matter how many times people say they understand how I feel and no matter how patient people are with Josephine’s behavior, they can’t truly understand my heart and how it breaks throughout the day or week.

But Lori and Mike Kelley CAN understand.  And that mutual understanding brings tears to my eyes…now in fact.

When I look at Isabelle and Josephine sitting next to one another, I see a bond.  A peace.  I see Josephine in Isabelle and Isabelle in Josephine.  Same voices, same eyes, same mannerisms, same body type, same smile, same crooked index fingers.

I finally feel an acceptance and relief I have wanted for almost 3 years now.

Please don’t get me wrong and let me be clear – we have the most amazing and supportive family and friends EVER and I am extremely grateful and lucky.  We could not have gone through these last 3 years without those friends and family.  We are blessed.

And now we are blessed to have the gorgeous and supportive Kelley family in our lives for this week and, I know, for many years to come.

We share something very special and unique.  We share Tetrasomy 8p.  But most of all, we share two inspiring and adorable little girls that are taking this world and flipping it on its ear!

WAY TO GO, J-Bean and Izzy!

 

Before The Meeting of Josephine and Isabelle…6-10-12 @ 9:12 AM

I am so full of excitement and anticipation right now! Why??? Because in less than 1 hour, our little J-Bean will be meeting her partner in crime, Isabelle!

Isabelle is almost 6 years old, from Iowa and was born with Tetrasomy 8p Mosaicism, just like J-Bean.

This is a meeting, not only for the girls, but for me as a mom and us as a family.

I will finally be able to talk to someone face to face who TOTALLY gets it when Josephine has her meltdowns. When Josephine won’t eat or gets mistaken for a kid half her age, this mom and dad will be able to understand.

There is no hesitation, no anxiety, no nervousness. Just excitement.

I truly didn’t know when or IF this meeting would ever happen and now it’s HERE!

WAY COOL!

In the Words of Oprah: “I’m Back America”!!

Well, well, well…look who decided to get back into writing…I know, I know…I am hearing it from everyone who follows J-Bean: “What’s happening with Josephine – you haven’t posted anything since the first day of school” or “I don’t have Facebook, so I need to read her web site to know what’s happening” or “Get off your duff and write – it’ll make you feel better”.

So, here I am…Ready to fill you in on, oh, I don’t know…THE LAST 9 MONTHS!

I think the best way to recap the 9 months is to break milestones into sections, rather than month by month – Lord know I can’t remember what I had for breakfast, let alone try to recap each month since September 2011!

Pride and Joy Minus the Tears

I did it!  I made it through the first part of Josephine’s journey – getting ready…

…riding the bus…

…and off to school!

Now is the next step…making it through the school day!  Something tells me I will be fine.  This is what Josephine needed and what I needed.  She is good and that helps my heart smile.